E005 A body in flux: a grounded theory of disordered eating in adults with systemic lupus erythematosus

Background/Aims Systemic lupus erythematosus (SLE) is a chronic autoimmune disease characterised by unpredictable flares, complex treatment regimens, and visible side effects. Quantitative studies suggest elevated rates of disordered eating among people with SLE, yet the psychosocial and illness-related processes underlying these behaviours remain unclear. This study aimed to develop an explanatory theory describing how disordered eating develops and is maintained among adults with SLE. Methods This qualitative study used Charmaz’s constructivist grounded theory approach. Adults aged 18 years or older with a confirmed SLE diagnosis and current disordered eating were recruited through social media and charity organisations (e.g. Lupus UK). Participants completed semi-structured online interviews exploring illness experiences and eating behaviours. Data collection and analysis occurred concurrently using constant comparison, memo-writing, and theoretical sampling until theoretical saturation was reached. Reflexivity and supervisory meetings enhanced rigour. Results Eighteen women (aged 25-59 years; mean disease duration 15.9 years) participated. Two interconnected theoretical models were generated:1) Treatment-Triggered Pathway: Disordered eating emerged as a maladaptive coping mechanism following SLE diagnosis and treatment. Identity disruption, bodily unpredictability, medication-related appearance changes (particularly corticosteroid-induced weight gain), and social comparison pressures combined to produce disordered eating as a means of regaining control. 2) Cyclical-Maintenance Model: Once established, these behaviours became embedded within the daily management of SLE. They were sustained through fatigue, pain, disrupted routines, low mood, and compensatory cycles of restriction, bingeing, and over-exercise. External reinforcement from family, cultural ideas, and weight-centred healthcare further perpetuated the cycle. Moderators (e.g., fragmented care, stigma) and mitigators (e.g., supportive relationships, self-compassion, integrated healthcare) influenced the intensity of these processes. Conclusion Disordered eating in SLE is best understood as an embodied coping response to illness-related disruption rather than a distinct psychiatric disorder. These findings emphasise the need for holistic, multidisciplinary rheumatology care that integrates psychological support. Additionally, it recognises the impact of identity, treatment side effects, and body image. Routine screening for maladaptive eating behaviours, patient-centred communication, and integrated mental-physical health services may prevent entrenchment of these behaviours and improve quality of life.